Clinical Data Sets

A clinical data set is an operational standard which is a list of well defined variables which are relevant to some or other clinical activity. The information must be unambiguous and should not contradict existing standards, so for example date of birth is recorded in a standard manner already established in the NHS data dictionary. More ‘specialist variables’ e.g. things to do with biometry for example which currently do not exist in the data dictionary, must be defined de novo in the cataract data set.

The data set is not a ‘form’ to be filled out; it refers to the variables to be collected and the format which they should take. It is expected that the data will be collected as part of routine care and other benefits such as audit and revalidation will be entirely secondary. It is about standardisation of data content, meaning and format for electronic use. Once approved, EMR systems will need to conform to this standard. Not every item of data will be mandatory. This exercise is not being done for the purposes of revalidation but should help with that process as a secondary benefit, predominantly when EMR systems are in place. If electronically collected data all have the same meaning regardless of locality and EMR system being used then this will ease the burden of collection of comparable cross boundary data and the burden upon doctors individually.

This type of working will also allow case mix adjustment of outcomes to ensure that comparisons are as fair as possible. Without standardised electronic collection of data this level of refinement (fairness) would not be possible. A practical benefit of case mix adjustment would be that surgeons would not feel under pressure to behave in a risk averse manner and avoid high risk cases in the interests of ‘maintaining a good average’.